Talk to Layla Stephen about the many hours she spent in surgery and she’ll laugh it off as ‘a piece of cake’.
Clocking up more than 22 hours in the operating theatre was never going to be pleasant. But being wheeled in to face the surgeon’s knife was nothing compared to the terror she felt at knowing she might not live to see her son start school.
When she was diagnosed with a rare, invasive form of slow-growing cancer, Layla was told she might only have four years left to live.
The baby she’d been so desperate to conceive was just a few weeks old and she was meant to be looking forward to making his first ever Christmas a special time for them all.
Layla and husband Andy thought they’d finally put the struggles of the last few years behind them. Settled in their dream home in Horndean, with baby Hadley-Ray in their arms, they were excited about the future.
Everything was perfect – until a hospital consultant spoke the words no-one ever wants to hear.
‘When you’ve never been diagnosed with anything and you’re healthy you think “I wonder what it would be like to be diagnosed with something, to be told you’ve got cancer. Wouldn’t it be awful”,’ says Layla.
‘But nothing can ever prepare you for it. I can’t put into words how horrific having someone tell you that is. It’s the most frightening thing.
‘I didn’t want to leave what I’d got. I thought “Who’s going to be there for Hadley, to take him to school, to help him do his homework, to teach him how to play the piano?”
‘I didn’t want to leave him. I’d got this fantastic life, this perfect child – then your whole life is flipped on its head. All you want to do is go back there, pretend this almost isn’t happening.’
Today, Layla knows there’s no escape from her condition because there is no cure.
She’s got carcinoid – tumours of the neuroendocrine system, which means that cells within her hormone and nervous systems are affected.
It’s the same kind of cancer that Apple founder, Steve Jobs, suffered from until his death last month at the age of 56.
But Layla has responded well to treatment and her prognosis is a lot better than it was when she was first diagnosed in the winter of 2008.
Feisty and rushing around like a whirlwind of energy, Layla classes herself as one of the lucky ones.
Carcinoid can go undetected and mis-diagnosed for years. While she battled on with her own symptoms for more than six years before she was diagnosed, it wasn’t too late to save Layla’s liver and that’s made a huge difference to her quality of life.
She’s now passionate about raising awareness of the condition and has just helped her consultant surgeon launch a new charity dedicated to supporting others like her. Neil Pearce and his team at Southampton General Hospital have played a massive role in Layla’s life and now she’s determined to give something back.
PLANETS is dedicated to defeating pancreas, liver and neuroendocrine tumours and will raise money for the hospital while supporting patients like Layla (see panel).
‘I am hell-bent on seeing a cure for this cancer in my lifetime as I feel deeply for those people who are walking into a consultant’s room only to be told some devastating news,’ says Layla.
‘I want to see a day when this no longer happens.’
She was 33 when Hadley was born and the couple had been trying for a baby for more than four years. Layla had suffered from crippling stomach pains in the past and had even tried acupuncture to ease her symptoms but no-one had ever got to the bottom of the problem.
During IVF treatment the pain had gone away, only to make a dramatic return just a few weeks after Hadley’s birth.
‘I went from a massive high to a massive low,’ remembers Layla.
‘Everything was great, he was perfect, everything was perfect and then six to eight weeks after he was born I fell ill. ‘I couldn’t eat, I was passing out and had stomach pains. I lost something ridiculous like more than three stone in two months.’
Carcinoid is sometimes mis-diagnosed as irritable bowel syndrome but Layla had also suffered from flushing, a fairly common side affect of the condition.
Yet it was only after she’d experienced childbirth that she knew her previous symptoms had been a real cause for concern.
‘I went through a 15 hour labour on only gas and air and it was only after I had that experience that I had anything to compare the stomach pains against,’ she explains.
‘The pain I’d had was as bad. That’s when I realised it wasn’t normal. That rang alarm bells and then six weeks after he was born it came back.’
At first, Layla’s family struggled to understand what was wrong until Andy’s mum tackled her, convinced that her weight loss and inability to eat was actually an eating disorder.
It was the confrontation she needed and after calling out the emergency doctor, Layla was rushed to Queen Alexandra Hospital, in Portsmouth.
An ultrasound revealed a tumour on her appendix and Layla met Neil for the first time two days before Christmas.
‘It was a significant day. He spent two hours going through everything and it made a massive difference. I didn’t know how important he was in his field but he was brilliant. Everything he said would happen, happened.’
On Christmas Eve she began having twice daily injections to prepare her for treatment and between January and November 2009, Layla had four rounds of surgery to remove her gall bladder, the primary tumour, her appendix, a large section of her bowel and a tumour in her neck. The injections had set to work on protecting her liver, which meant only sections of it needed to be removed.
Layla will continue to need treatment – she currently has two tumours in her stomach and a new one on her liver that will need to be operated on. In the future she might need a liver transplant and there’s always the possibility that her consultant will one day find a tumour that can’t be operated on.
But for now she says she’s still smiling – and fighting.
Layla believes her perspective on life has changed for the better as a result of what she’s been through.
She can’t know all that the next few years will bring, but with Hadley and Andy at her side she knows she’ll never give up.
‘When I was diagnosed I was gutted, so scared,’ she adds. ‘The fear was awful and we spent a lot of time just crying.
‘I remember I was having a real sorry for myself phase just after I’d been diagnosed, but something a friend said to me pulled me out of it.
‘He’d been diagnosed with hodgkin’s lymphoma when he was a child and he said to me “What’s your problem? You’re going to pull through, you’re not going anywhere.”
‘I’d been so wrapped up in my own little place but I knew I had it in me to fight.
‘Hadley was upstairs asleep and I got him up to change his nappy. I looked into his eyes and thought he’s right, I’m not going anywhere.
‘I’ve got too much to live for.’
When Neil Pearce told Layla Stephen he wanted her to get involved with the charity he was setting up, she jumped at the chance.
After all she’d been through – and all he’d done for her – why would she feel any differently?
PLANETS is based at Southampton General Hospital and will raise money for treatment, research and education.
As well as organising a black tie ball to raise funds, Layla has helped create the charity’s new website (planets-carcinoid.org) which will go live at the end of the month.
One of the website’s key aims will be to set up a network of information and support for anyone affected by neuroendocrine tumours.
And the charity will also use money raised for its tumour bank, which stores samples of blood and cells from patients with pancreas, liver and neuroendocrine tumour cancers for research so that new treatments can be developed.
‘Our initial aim for 2011 has been to raise money for new portable ultrasound machines for radiology and theatres to replace the out-dated technology we have been using to help with the diagnosis and treatment of liver and pancreatic tumours,’ explains Neil.
‘The new machines will allow us to find and treat smaller and earlier tumours, giving more accurate targeting of spots of disease to improve the chances of curing patients of these tumours.’
On Friday, Layla hosted the charity ball and raised an incredible £10,000 from tickets, an auction and teddy bear sales.